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CFS- clarification of the exercise at 50-70% age predicted maximum

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Dear National Institute for Health and Care Excellence,

1/ I seek information on the basis for NICE stating that patients with CFS should only wear heart rate monitors once they can walk 30 minutes, 3 days a week i.e. what is the basis for implying that patients who can not walk for 30 minutes 3 days a week should not wear heart rate monitors?

2/ I seek information on NICE's advice for patients diagnosed with CFS and no other medical diseases or conditions, who exceed 50-70% of their age predicted maximum heart rate at rest.

faithfully,

Dave Tullerach

NOTE: I have reviewed the information in the public domain and the available background information on how the NICE guidelines were derived and the information requested is not in these documents.

NICE Mail, National Institute for Health and Care Excellence

Dear Mr Tullerach

 

Reference No: EH82641

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 10
July 2017, in which you requested the following information:

 

1.     Iinformation on the basis for NICE stating that patients with CFS
should only wear heart rate monitors once they can walk 30  minutes, 3
days a week i.e. what is the basis for implying that patients who can not
walk for 30 minutes 3 days a week should not wear heart rate monitors?

2.     Information on NICE's advice for patients diagnosed with CFS and no
other medical diseases or conditions,  who exceed 50-70% of their age
predicted maximum heart rate at rest.

 

Your request will now be considered and you will receive a response within
the statutory timescale of 20 working days as defined by the Act, subject
to the information not being exempt or containing a reference to a third
party. In some circumstances we may be unable to achieve this deadline. If
this is likely you will be informed and given a revised time-scale at the
earliest opportunity.

 

There may be a fee payable for the retrieval, collation and provision of
the information you request. If this is the case you will be informed and
the 20 working day timescale will be suspended until we receive payment
from you. If you chose not to make a payment then your request will remain
unanswered.

 

Some requests may also require either full or partial transference to
another public authority in order to answer your query in the fullest
possible way. Again, you will be informed if this is the case.

 

I would like to take this opportunity to thank you for your interest in
NICE.

 

Should you need to discuss this further please contact the corporate
communications team on 0300 323 0141.

 

Kind regards

 

Helen

 

 

 

Helen Finn

Communications Manager (Enquiries)

National Institute for Health and Care Excellence

Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United
Kingdom

Tel: 44 (0)300 323 0141 Fax: 44 (0)300 323 0149

Web: [1]http://nice.org.uk

 

 

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Dear NICE Mail,
FYI
Since writing to you I joined a support group for people with CFS who are self managing the disease wearing heart rate monitors. The figure that they are using is not to exceed 50-60% of heart rate maximum. This is based on a talk that Prof. Mark Van Ness gave in Bristol. Those of use pacing with heart rate monitors are having excellent results- glacially slow but steady and sustainable.

Yours sincerely,

Dave

NICE Mail, National Institute for Health and Care Excellence

Dear Mr Tullerach

Reference No: EH82641

FREEDOM OF INFORMATION ACT 2000

Thank you for your request for information, received at this office on 10
July 2017, in which you requested the following information:

 

1.            Information on the basis for NICE stating that patients with
CFS should only wear heart rate monitors once they can walk 30  minutes, 3
days a week i.e. what is the basis for implying that patients who can not
walk for 30 minutes 3 days a week should not wear heart rate monitors?

2.            Information on NICE's advice for patients diagnosed with CFS
and no other medical diseases or conditions,  who exceed 50-70% of their
age predicted maximum heart rate at rest.

 

Having considered your request, we believe your request is invalid under
the Freedom of Information Act (FOIA) for the reasons set out below.

 

Under section 8(1)(b) of the Act, requesters must provide their real name
for a request to be valid: 

 

‘(1) In this Act any reference to a “request for information” is a
reference to such a request which —

(a) is in writing,

(b) states the name of the applicant and an address for correspondence,
and

(c) describes the information requested.’

 

Under the FOIA, establishing a requester’s true identity can be relevant
where an authority is considering aggregating the cost of requests or
refusing a request as vexatious or repeated.

 

We have identified a pattern of requests submitted via whatdotheyknow.com
to NICE and to a number of other organisations. These requests are
substantially similar or overlapping in both nature and format and appear
to be part of a campaign.

 

This pattern leads us to believe that the requester(s) may be using
pseudonyms.

 

We therefore believe we are not obliged to respond to your request.

 

Yours sincerely

 

Helen

 

 

Helen Finn

Communications Manager (Enquiries)

National Institute for Health and Care Excellence

Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United
Kingdom

Tel: 44 (0)300 323 0141 Fax: 44 (0)300 323 0149

Web: http://nice.org.uk

 

show quoted sections

Dear NICE Mail,
The FOIAct does not require the provision of a persons address.
A person's name and email address is sufficient.
It is hard to see how the requests for information on CFS are onerous, certainly the provision of information has not been onerous as next to no information has been forthcoming.
What is shocking is the lack of information about the disease CFS, nobody appears to have any policies, procedures, clinical exercise assessment data, physical, physiological, outcome data.
It appears that NICE may have been influenced by Ester Crawley and taken on board the advice she gave at her talk to the British renal society on how to avoid providing information requested under the FOI Act...pick an excuse any excuse to keep tax payers in the dark.
NICE has stated that its decade old guidelines for CFS do not need revision, yet the information on heart rate pacing is at odds with research findings.

1. Information on the basis for NICE stating that patients with CFS should only wear heart rate monitors once they can walk 30 minutes, 3 days a week i.e. what is the basis for implying that patients who can not walk for 30 minutes 3 days a week should not wear heart rate monitors?
(NOTE: that counter intuitive as it may seem this is how Ester Crawley has interpreted heart rate monitoring and children enrolled for her MAGENTA trial will not be given heart rate monitors until they can walk for 30 minutes 3 times a week . An odd way to treat children with a disease known to cause heart rate abnormalites with exertion - as per the Canadian Consensus Criteria).

2. Information on NICE's advice for patients diagnosed with CFS and no other medical diseases or conditions, who exceed 50-70% of their age predicted maximum heart rate at rest.
(NOTE: NICE does not appear to cater for CFS patients with heart rate abnormalities in its guidelines, or have I missed something)

I request that NICE provides the information requested, given the fact that NICE has recently stated that the guidelines do not need revising.
Regards

David Tullerach

NICE Mail, National Institute for Health and Care Excellence

Dear Mr Tullerach

We have not asked for your address, we have asked for verification of your identity. The Freedom of Information Act (FOIA) requires enquirers to provide their real name to be valid under section 8(1)(b):

Section 8
‘(1) In this Act any reference to a “request for information” is a reference to such a request which —
(a) is in writing,
(b) states the name of the applicant and an address for correspondence, and
(c) describes the information requested.'

We would accept an official document showing your name as identifying information. For example a birth certificate, passport, driving licence or council tax statement.

If you do not wish this to be in the public domain via whatdotheyknow.com you can email a scanned copy of the document to [NICE request email]. It will be used for identification purposes only and remain confidential.

Without this information we are unable to respond to this, or any other request you submit. We will not respond to any further correspondence until we receive this verification.

If you are not satisfied with the handling of this request you may contact the Information Commissioner’s Office at:

Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
www.ico.gov.uk

Kind regards

Helen.

Helen Finn
Communications Manager (Enquiries)
National Institute for Health and Care Excellence
Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom
Tel: 44 (0)300 323 0141 Fax: 44 (0)300 323 0149
Web: http://nice.org.uk

show quoted sections

Dear NICE Mail,

The website What do they know? looked into this issue as it is often being used by Departments such as yourself to hide information from the tax payer and it was determined that an email address is sufficient. There is no legal requirement to provide ID documents. ID documents by their very nature contain identifying information. I have severe concerns about providing ID documents to NICE which then will enable my medical records and history to be accessed.
This request appears to be vexatious and serves no purpose, nor is it of any benefit to NICE.

Yours sincerely,

Dave Tullerach

We don't know whether the most recent response to this request contains information or not – if you are Dave please sign in and let everyone know.